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When I stopped Kaly the one time that I did (at the end of Ph.2B in 2008) I had a flooding feeling...very wet - felt like hemopytsis. I wonder if this is what your friend is referring to Mandy? I wonder if his CFTR value isn't holding steady on the dose. He should note what time of day he has...

When I stopped Kaly the one time that I did (at the end of Ph.2B in 2008) I had a flooding feeling...very wet - felt like hemopytsis. I wonder if this is what your friend is referring to Mandy? I wonder if his CFTR value isn't holding steady on the dose. He should note what time of day he has...

Yes the consistancy changed to a buggery, stretchy consistancy and white. (back in 2008) I had never seeen stretchy stuff come out of my lungs. It has been bulky, blobs for as long as I can remember. Unfortunately, I have not seen flora changes at any point. I still culture both PA and MRSA and...

Yes the consistancy changed to a buggery, stretchy consistancy and white. (back in 2008) I had never seeen stretchy stuff come out of my lungs. It has been bulky, blobs for as long as I can remember. Unfortunately, I have not seen flora changes at any point. I still culture both PA and MRSA and...

I did not notice a wet feeling just the need to clear mucus that came out easily. I didn't chalk it up to much as my cough can change from one day to the next a lot. Each day got progressively better and the proof was in the pft numbers. It was a slight change each day that added up over time to...

I did not notice a wet feeling just the need to clear mucus that came out easily. I didn't chalk it up to much as my cough can change from one day to the next a lot. Each day got progressively better and the proof was in the pft numbers. It was a slight change each day that added up over time to...

The first trial I was on drug for 28 days. I went from a normal baseline of 1.8 to an FEV1 of 2.1L a number I hadn't seen since 1999. That's a 14.3% increase. Then I was off drug and lost all increase within a week and fell ill :-( That was July 2008. Then in Oct. 2009 I started Ph. 3 where I...

The first trial I was on drug for 28 days. I went from a normal baseline of 1.8 to an FEV1 of 2.1L a number I hadn't seen since 1999. That's a 14.3% increase. Then I was off drug and lost all increase within a week and fell ill :-( That was July 2008. Then in Oct. 2009 I started Ph. 3 where I...

Increased cough started within 24 hrs. I didn't notice it the first time until I started coughing up very unusual plugs. So much so that both times I had streaking which I never do. These weren't pure blood incidents like I've had before but rather so much coughing and mucus coming out that my...

Increased cough started within 24 hrs. I didn't notice it the first time until I started coughing up very unusual plugs. So much so that both times I had streaking which I never do. These weren't pure blood incidents like I've had before but rather so much coughing and mucus coming out that my...

I think the point is Harriett that we can't find posts by words in message only title. Indemnity is in the title so that will pop it up but if all a person could remember is Combined Insurance which was in the body they should also be able to search which they are not currently able to do. A...

I think the point is Harriett that we can't find posts by words in message only title. Indemnity is in the title so that will pop it up but if all a person could remember is Combined Insurance which was in the body they should also be able to search which they are not currently able to do. A...

I believe the problem is that the search is only looking at titles not content for word match. Your example of the Combined Insurance post is a great one. Nearly every post mentions "Combined" but the title has the words "Hospital Indemnity" and nothing about Combined so it is not coming up. The...

I believe the problem is that the search is only looking at titles not content for word match. Your example of the Combined Insurance post is a great one. Nearly every post mentions "Combined" but the title has the words "Hospital Indemnity" and nothing about Combined so it is not coming up. The...

Teri, How are you doing?

Teri, How are you doing?

Hi Autumn, I hope you find answers that give you some relief. I personally have great hope for her ability to hear and speak with the help of the hearing aids and speech therapy. Do keep speaking to her - who knows what she actually hears and how accurate these tests really are. Plus she's...

As we speak there are mothers who are and were trying to get pregnant even before Kalydeco was approved. They will be started on the drug and will have to make up their mind (along with doctor's guidance) if they will stop the drug either before TTC, once they find out they are pregnant, only...

I'll definitely try this next time it happens. Do we know why it does this sometimes but not all the time?

I'll definitely try this next time it happens. Do we know why it does this sometimes but not all the time?